Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

Search This Blog

Wednesday, July 1, 2009

The Politics of Civil Rights: Disabled and Gay People

According to a New York Time/CBS poll 57% of people under 40 support same sex marriage. To me, this represents great social progress. The majority of younger Americans recognize the rights of gay people. I asked my teen age son about this and what he had been taught about gay rights in school. His answer was encouraging and disappointing at the same time. He told me gay rights began "a long time ago because of a riot in New York City". Here he was referring to the 40th anniversary of the police raid on the Stonewall Inn, a gay bar. Wow, I thought this is great. But this comment was quickly followed by the observation that being gay was no big deal but "smart gay people remain in the closet if they want to survive high-school".

My son's observation about gay rights reflect a dichotomy in our society. The cultural acceptance of homosexuality is increasing across our country. The same can be said of disability rights as I would say that most people think American society should be accessible to all people with or without a disability. This is great but the reality as I know it and the reality as most gay people know it is very different. A gay couple with a child in my school district would face significant stigma and be socially ostracized. An openly gay student at my son's high-school would face the same social isolation as gay parents. Likewise, a student with a physical disability at my son's would encounter overwhelming architectural and social barriers. This student would be segregated from his peers getting to and from school, would not be included in any class trip, and be forced to get around the school in ways that defy common sense and make routine socialization impossible. These real life barriers reflect the fact that what people say, i.e. we support disability and gay rights, is a cultural fiction. Disability rights and gay rights are not valued or considered to be as important as the rights of women and minorities. Bigotry based on racial and sexist grounds is an anathema in our culture.

The dichotomy between reality as disabled and gay people know it and what is stated about equality is also reflected in national politics. Obama made it very clear during the election that he supported the Community Choice Act. That support has been reduced to an abstract level and it is obvious the Community Choice Act is not going to be a part of any health care reform. This change, significant in my estimation, is a bitter disappointment. Gay people face the same sort of political double talk. On Monday 250 gay leaders met Obama to commemorate the birth of the gay rights movement. Yet Obama's record on gay rights is mixed. For instance he has not fulfilled a campaign promise to repeal the policy barring openly gay people from serving in the military.

My observations about the rights of disabled and gay people can be easily gleaned from reading national newspapers, watching the network news programs, or cable TV news stations such as CNN and MSNBC. Our culture may be changing but our institutions, the White House, local governments, schools, nursing homes, prisons, corporations, and a myriad of other institutions remain socially stagnant. Sure some openly gay and obviously physically disabled people have been elected to office but their presence is not the norm nor is their presence welcome. How do I know this? All I need to do is listen to comments made by my friends and neighbors when Representative Barney Frank, Democrat from MA appears on TV. I am not sure which is despised more--his views or the fact he is gay. Similarly, when I attend school board meetings and point out the lack of physical access my presence and views are despised. I am perceived to be narcisstic, eager to spend money that could more wisely be spent on "normal" children instead of the needs of a tiny minority.

I wish I had a way to resolve the difference between what people say about disability and gay rights and reality. I am not alone in this regard for both liberal and conservative politicians have failed just as badly as I have. Intellectually I think the answer comes in identifying core belief systems. In terms of disability, the field I know best, there are various models associated with disability. These models, notably the social and medical model, are tools that can be used to provide a basis upon which our government and society can devise ways to insure all people are treated equally. In theory this is great. But I sincerely doubt a serious discussion of the models associated with disability will ever take place in a public forum. What we need, that is our society needs, is a two pronged attack for disability rights. We need foot soldiers. groups like ADAPT, that will force the government via civil disobedience to address disability rights. Nothing works better than civil disobedience and shaming politicians into paying attention. But we also need such activists to work hand in hand with disability rights scholars and the medical community. To date, this sort of collaboration has not worked. We have doctors seeking to "cure" or even abort disabling conditions, disability activists protesting such efforts, and disability rights scholars analyzing disability from afar. This lack of collaboration is inexcusable. If we want real social change to take place in my life time we, disability scholars, doctors, and activists must work together to insure society actually does what it says. Thus I think we can eliminate the dichotomy between what we say and reality. However to accomplish this will take a united effort that has not as yet existed.

Goldfish, Many people that see disability as a social equality issue first and foremost do not think about the role of the medical community. I think this way but with a twist. To me, a fundamental bias exists in the medical community that perceives disability as fundamentally bad. I picked up on this within hours of landing at a rehab hospital long ago. Each experience I have had with the health care system since reinforces my inherently unequal social status. This has little do with medicine but the social dimensions of a supposedly hard scientific field. The ramifications of this are profound. For instance, 90% of fetuses that test positive for Down Syndrome are aborted. Why are such fetuses aborted? Disability is feared, stigmatized, and the support system for long term care is a national disgrace. Thus people with disabilities are needlessly dying of social abuse and the health care system and those that work within it are part of the problem.

In stating the above I do not mean to diminish the distinction between social equality and medical needs. This is a very important point far too many people do not get, a problem compounded by terrible media exposure in terms of covering disability rights.

Sorry for being slow to get back here, I'm not in great shape, and having written a rambling follow-up comment, managed to close the window without posting it! I gave up and came back now.

I reckon that the prejudice that exists within the medical profession is only a reflection of the society in which it operates. This is the case with disablism, but it's also the case with homophobia, sexism and racism; this still counts in healthcare, especially mental healthcare but across the board to a lesser extent.

So if you take something like the Downs termination stats, I honestly believe that this is a reflection of how ordinary folk frame disability (I wrote about the Downs thing myself here). When relative of mine had a child with Downs Syndrome in the 1950s, and that child died within a few days, it was considered a blessing. The only change that has taken place is that we have technologies to prevent such births happening, and people - doctors, prospective parents, auditors, educators, and everyone else involved in these decisions - have a little more power than they used to.

Power matters - and the fact is that, as in your own experience, healthcare workers yield a lot of power over us at the times we are most vulnerable. So it really really matters when they have prejudice. But I don't see any evidence that this prejudice is of their making, and not simply borrowed from the society in which they live.

As for Claire's points, I have a neurological condition which would still cause me problems even if we lived in an egalitarian utopia. Only I separate the two sorts of problems I have. If I'm in pain or have difficulty reading,that's medical. If I can't access a building with steps up to the door or I can't get a best-selling book on CD, that's disability.

Medical need isn't what William, your daughter and I have in common - I should imagine our medical needs couldn't be more diverse! And medical science saves, restores and maximises functionality for everyone - they don't work for us. Many non-disabled people would have severe impairments if it wasn't for modern medicine. Meanwhile, many disabled people don't have the need to see their GP from one year to the next.

I'm afraid the reason that disabled people like your lass are often ignored by disability activism is because disabled people, like aforementioned healthcare workers, are part of a disablist society which has a hierarchy of acceptable impairments. And in struggling against assumptions made about us, we can end up ignoring or even demeaning people with less privilege than ourselves. Only last week I saw a post elsewhere about how wheelchair users shouldn't be mistaken for "retards"!

I'm sorry for such a ramble, but this was an interesting discussion, I agree with most of what both of you said, so wanted to explain the small way in which I disagree - and like I say, not in the best shape for making cogent and concise arguments!

"Representative Barney Frank, Democrat from MA appears on TV. I am not sure which is despised more--his views or the fact he is gay."

I have sadly reached the conclusion that a lot of people simplify their brain functions to the point of stupidity. Do you ever get the feeling, when you are searching for a word, that you are flipping through a file of index cards in your head? I do, esp. when I know the word starts with a "b" for instance. Well, I think for some people, "Barney Frank" is at the top of an index card that says "gay" and "scandal" and they blurt out those connections and don't see the need to think any farther or allow any more information on that card.

"But I don't see any evidence that this prejudice is of their [health care workers'] making, and not simply borrowed from the society in which they live." Probably true, and another example of not thinking but just flipping over to whatever got printed on the internal index card.

Women whose prenatal tests indicate Down syndrome in their unborn report that the doctor who gives them this information sometimes talk about scheduling an abortion in the same visit, as though it were a given. Imagine being hit with that news and having your care provider pushing you to take the next step before you could even assimilate it. Or they report being asked, after the child was born, why they didn't abort. That's not only in the West, by the way - see here. In Nzingha's case it was a physician who made those statements. The standard Down Syndrome index card has "abortion" on it and evidently not much else. Book smarts does not equal having any sense.

And yes, that absolutely is eugenics, William. It's eugenics, too, if a person who carries Tay-Sachs or sickle cell chooses not to conceive, and I'd probably make that choice myself; but in the case of aborting a child who already exists, you've crossed the line into killing someone who doesn't meet spec.

Goldfish, MY reply is even slower and I have no excuse. Yes, the bigotry that exists in the medical field reflects what exists in society at larger. I tend to think prejudice as it pertains to minority groups is magnified in a hospital or medical setting--the reasons for this vary greatly. In my estimation medical settings are hostile to most minority groups. The root of this is as you point out is power or power inequities. The most vulnerable, those least able to assert their rights are likely to receive the worst treatment. Here I think the elderly are a great example. I am always shocked at how poorly elderly people are treated--it makes me sad, worry about my own old age, and think disability is not such a big deal.

Laura, The stupidity of people never ceases to amaze me. When I was a child my parents pounded into me the idea that education was the most important aspect of life. Educators among all members of society were to be respected the most--a close second were all those that make the community a safe place to live (firemen and police). Today, an amoral accumulation of money has become valued above all else. When I state I am a part time professor and writer people literally laugh at me. This does not bother me but does have implications. The average person does not know what Eugenics was and is. Thus when a pregnant confronted with an MD that states her child had Down Syndrome and schedules an abortion at the same time she does not have the analytical skills or background to understand what is taking place. What I am driving at is that education has less do with getting a degree than developing a base of knowledge from which one can confront a host of issues adults will surely encounter.

In my experience,gay people are treated better then the disabled. I don't see the point. In my opinion, it's screwed. The disabled should be respected. They are not treated kindly but still live life happily.